The starting point for MSMBA having been established ten years ago was the aim to lobby for a medicinal therapy not available in Hungarian clinical routine treatment practices for MS patients, but much more efficient, i.e. promising longer and higher quality life. It was no secret that the founders’ aim was to shape the representation [&hellip
The starting point for MSMBA having been established ten years ago was the aim to lobby for a medicinal therapy not available in Hungarian clinical routine treatment practices for MS patients, but much more efficient, i.e. promising longer and higher quality life. It was no secret that the founders’ aim was to shape the representation of interests in an organized form through the Foundation. In the Deed of Foundation, the names of three MS patients were included, who established the public utility organization on 5 May 1999. Subsequently, the Foundation already supported the establishment of the National Association of Multiple Sclerosis Patients (SMBOE) in 2000, which was joined by a number of municipal and regional MS clubs and associations.
The new foundation fervently began to perform its tasks, i.e. to fight for the highest level medical treatment and rehabilitation of MS patients, for the social security of families concerned, and for equal rights and opportunities for the patients. First of all, they tried to involve as many people as possible and to recruit supporters. In addition to professional and civil society relations, they also tried to negotiate with political decision-makers, ministry leaders and MPs, of whom Mihály Kupa and János Latorcai undertook to be patrons and to provide political lobbying. In the meantime, work was successfully launched in other areas as well: in 2000, the Foundation was already represented at the 2nd Congress for Patient Attendance at Home held in Kecskemét, and at the European Civil Forum and Expo Event in Budapest; furthermore, the Foundation held a specialist further training session in Budapest and in Gyula for the attendants of home-bound patients, about the care at home of MS patients.
In 2001, in cooperation with the national association and the related Medical Advisory Board, the Foundation conducted a complex survey engaging 500 patients, thus exploring the current situation of MS patients. The Foundation also set out the plans for establishing a future rehabilitation institution and a special nurse – health worker network, the latter of which has not been implemented yet.
The people at the Foundation realized that the local organizations had to be strengthened, the clubs and associations had to be armoured with tools and knowledge, so that a stable and well-operating base could be established in service of the patients, and so that also at a national level they would be able to maintain the best bargaining position possible at meetings on behalf of the patients.
Through the financial support received from applications and from the sponsors supporting the evolving organizational network, the Foundation has been able to contribute thousands of Euros each year to the operations and programs of the local organizations. In the meantime, the Foundation also worked hard to reserve some provisions in order to have sufficient own resources for the developments and investments planned.
This turned out to be indeed necessary, as in 2002, the Foundation started a – so far unique – project: the Board decided to purchase an estate in Nyíregyháza, which would be extended, equipped with therapeutic assets, and thus to establish the first rehabilitation centre of the country there, which would exclusively specialize in the treatment of MS patients. For the establishment of the centre, the Foundation won nearly 120 thousand Euros from the Phare Fund of the European Union in 2003, which was operating as a fund providing alignment support for Hungary, a country in preparation of joining the EU at that time. In the same year, more than 20 thousand Euros of subsidies were collected during one single charity event in the Budapest Eco-House for the MS Center. The acknowledgement and credit of the Foundation was also reflected by the fact that pharmaceutical companies decided to grant a total of 75 thousand Euros of donations, and from people donating one percent of their personal income taxes, more than 4 thousand Euros were granted to the Foundation. In 2004, the Ministry of Health provided nearly 25,000 Euros for the day-care Nyíregyháza Institute.
Naturally, an achieved goal always brings up another one, therefore developments are continuously ongoing until today. In total, MSMB has spent more than 500 thousand Euros on the facility so far.
In addition to the large-scale investment, naturally there are other important events characterising the last ten years of the Foundation and of the patients, as the Foundation was not established to create one single institution only, but to represent patients on a national level. As recalling memories is always a subjective issue, it is difficult to highlight just one visit to a medicinal resort, an excursion, a lifestyle camp, a conference or any of the MS Days entertaining several hundred fellow patients – the majority of these events, however, has one thing in common: their organization was enabled by the support of the Foundation. And, now that this section was mainly about numbers, let us cite one more figure from the near past: only in 2008, the Foundation provided a total of nearly 50 thousand Euros as support to local clubs and associations.